Post long term issues

That should have said stoma.

Hi BoboBows ,

I don’t have personal experience of exactly what you are describing, I haven’t had APR surgery but did have chemoradiotherapy & have had all manner of aches & pains in the 8 years since.

I now suffer with restless legs particularly if I’m too hot or tired along with cramp in my thigh muscles. I began taking a 3 in 1 magnesium supplement some time ago & that has definitely helped with the cramps & the restless legs & I do physio exercises daily for my lower back & hip pain. Also epsom salt baths can be really good for general aches & pains. Could you give your treating team a call just in case they want to check you over?

APR surgery is a big surgery & recovery isn’t always linear from that or from chemoradiotherapy, my issues with my hips & back didn’t begin until I was 5-6 years post treatment but a recent MRI shows a boat load of inflammation all through my pelvis.

Sorry I couldn’t be of more help, hopefully someone will be along soon to offer some more constructive advice.

Nicola 

Hi Nikki65,

thank you for taking the time out to reply. I also have been taking magnesium capsules which seemed to help at the start but now I am finding myself waking up earlier (1am) and struggling to get back to sleep as my groin area is so achy. I also have a really awful aroma from my ladies department which comes and goes. I can go weeks without any smell then suddenly it is back. It can be foul. I have had swabs taken but nothing showing up. I am back to the hospital to meet with the consultant on the 8th September so will mention again.

Hope you are well?

Hello BoboBows 

You really have been through some major surgery and I am sorry that you are having these ongoing problems with an achy groin.  I haven't had an APR but I do have a stoma although I don't think my aches are anything to do with that.  My aches are similar to Nicola's and I also have extremely sensitive skin in the area, so much so that I have an array of honeycomb cushions that I have strategically placed around the house and in the car.  But fortunately I am not bothered (by the skin at least) when I am lying down.

I would definitely mention all of this to your consultant when you next see them to be thoroughly checked out.  I am sorry you are going through this and wish I could do more to help, I do hope you get some relief.

Big hug

Irene xx

PS  I have some minor fluid loss from the urethra which isn't urine, I did the sniff test!  I don't know what it is and put it down to the radiotherapy damage in the area.

Hello Irene,

Thank you your reply. I am doing really well considering. Just these annoying little bits and pieces now. I am at the consultants soon. Will definitely mention again. Hope you are doing well too.